by admin | May 19, 2020 | Community & Support
As spring slips away and summer is within our grasp, our natural urge to enjoy the great outdoors intensifies. However, even limited sun exposure can be dangerous to ECD patients under some targeted-therapies. If you are being treated with a BRAF or MEK-inhibitor, or...
by admin | May 5, 2020 | Community & Support
Living with a rare disease can be hard: mentally, physically, and even financially draining. A 2013 survey called the Rare Disease Impact Report (conducted in the US and UK) asked patients, healthcare professionals and payers (who finance...
by admin | Apr 21, 2020 | News
You are likely already a member of the ECD Global Alliance and we hope that you have been able to find help and comfort in the resources that we have available to our members. It is our amazing team of volunteers, donors, medical professionals, and staff who make it...
by admin | Mar 31, 2020 | Community & Support, News, Research & Awareness
What is a consensus? A medical consensus is a report on a specific subject, such as Erdheim-Chester Disease, from a group of medical experts that have a particular knowledge of the disease. This group of experts agree on evidence-based and state-of-the-art...
by admin | Mar 24, 2020 | Community & Support, News
The intent behind our blog is to update our members with important information that can affect the daily lives of ECD patients and their families. We try to provide this information with the assistance and guidance of...
